Parent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer: a scoping review
Parent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer: a scoping review
Background: parents of children who are diagnosed with a poor-prognosis cancer want to be involved in making treatment-related decisions for their child. They often make repeated decisions depending on their child’s response to treatment and can experience decisional regret as a consequence. Understanding parent values and preferences when making treatment-related decisions may help enhance discussions with healthcare professionals and identify additional ways of providing support to this parent population.
Objectives: to explore parent values and preferences underpinning treatment decision-making for children receiving cancer-directed therapy for a poor prognosis cancer.
Methods: a scoping review of research literature and systematic reviews from qualitative, quantitative, and mixed methods studies was conducted following Joanna Briggs Institute methodology. Articles which included parents of a child who received cancer-directed therapy for a poor-prognosis childhood cancer, under the age of eighteen years were considered. Four electronic databases were searched (CINAHL, Medline, PsychINFO, Web of Science Core Collections). Reference and citation lists of all included full-text articles were also searched. Summative content analysis was used to synthesise findings and develop themes.
Results: twelve articles were included. Parent decision-making was affected by underpinning factors: hope for a cure, fear of their child dying and uncertainty. Influencing factors: opinions of others, child’s wishes, and faith and religion had the potential to inform decision-making processes. Parents valued having enough time, being a good parent and being involved in decision-making. Preferences within these values varied resulting in the potential for conflict and ‘trade-offs’ in making decisions. Conclusions: Parent decision-making in poor-prognosis childhood cancer is complex and extends beyond values and preferences. Underpinning factors and values are consistent through the decision-making process with influencing factors and preferences varying between parents. Preferences can conflict when parents want to continue cancer-directed therapy whilst maintaining their child’s quality of life or can change depending on a parents’ cognitive state as they realise cure might be unlikely.
Cancer, Child, Decision-making, Parent, Poor-Prognosis
Pearson H., Helen
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Bryan, Gemma
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Kayum, Catherine
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Gibson, Faith
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Darlington, Anne-Sophie
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14 October 2022
Pearson H., Helen
1a9dfc7a-f1fa-4152-a618-55a946e655db
Bryan, Gemma
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Kayum, Catherine
14526de6-16ef-4c09-8ef3-369a8160c5d1
Gibson, Faith
b537d483-3f20-4f15-a9b8-880758746728
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Pearson H., Helen, Bryan, Gemma, Kayum, Catherine, Gibson, Faith and Darlington, Anne-Sophie
(2022)
Parent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer: a scoping review.
BMC Pediatrics, 22 (1), [595].
(doi:10.1186/s12887-022-03635-1).
Abstract
Background: parents of children who are diagnosed with a poor-prognosis cancer want to be involved in making treatment-related decisions for their child. They often make repeated decisions depending on their child’s response to treatment and can experience decisional regret as a consequence. Understanding parent values and preferences when making treatment-related decisions may help enhance discussions with healthcare professionals and identify additional ways of providing support to this parent population.
Objectives: to explore parent values and preferences underpinning treatment decision-making for children receiving cancer-directed therapy for a poor prognosis cancer.
Methods: a scoping review of research literature and systematic reviews from qualitative, quantitative, and mixed methods studies was conducted following Joanna Briggs Institute methodology. Articles which included parents of a child who received cancer-directed therapy for a poor-prognosis childhood cancer, under the age of eighteen years were considered. Four electronic databases were searched (CINAHL, Medline, PsychINFO, Web of Science Core Collections). Reference and citation lists of all included full-text articles were also searched. Summative content analysis was used to synthesise findings and develop themes.
Results: twelve articles were included. Parent decision-making was affected by underpinning factors: hope for a cure, fear of their child dying and uncertainty. Influencing factors: opinions of others, child’s wishes, and faith and religion had the potential to inform decision-making processes. Parents valued having enough time, being a good parent and being involved in decision-making. Preferences within these values varied resulting in the potential for conflict and ‘trade-offs’ in making decisions. Conclusions: Parent decision-making in poor-prognosis childhood cancer is complex and extends beyond values and preferences. Underpinning factors and values are consistent through the decision-making process with influencing factors and preferences varying between parents. Preferences can conflict when parents want to continue cancer-directed therapy whilst maintaining their child’s quality of life or can change depending on a parents’ cognitive state as they realise cure might be unlikely.
Text
Scoping Review Report Manuscript V2.0 FINAL
- Accepted Manuscript
Text
s12887-022-03635-1
- Version of Record
More information
Accepted/In Press date: 27 September 2022
Published date: 14 October 2022
Additional Information:
Funding Information:
Helen Pearson is supported by National Institute Health Research (NIHR) Clinical Doctoral Research Fellowship NIHR300548.
Funding Information:
With thanks to Vicky Fenerty, Research Engagement Librarian at The University of Southampton for assistance in developing the search strategy and peer-reviewing the database searches. With thanks to Carol Bell, Karl Cox, Leona Knox and Nick Bird, parent and carers who were involved in the Patient Public Involvement Consultation phase, reviewed this scoping review report and had input into the interpretation of the results. This research was supported in part by the NIHR Great Ormond Street Hospital Biomedical Research Centre.
Funding Information:
This research was supported in part by the NIHR Great Ormond Street Hospital Biomedical Research Centre.
Publisher Copyright:
© 2022, The Author(s).
Keywords:
Cancer, Child, Decision-making, Parent, Poor-Prognosis
Identifiers
Local EPrints ID: 474031
URI: http://eprints.soton.ac.uk/id/eprint/474031
ISSN: 1471-2431
PURE UUID: a5e035b4-6da6-4e2f-a1f1-41236d4faacc
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Date deposited: 09 Feb 2023 17:46
Last modified: 17 Mar 2024 03:54
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Contributors
Author:
Helen Pearson H.
Author:
Gemma Bryan
Author:
Catherine Kayum
Author:
Faith Gibson
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